This week for Special Saturday we are sharing what our children's Special Needs are. Personally I think all children have Special Needs but some children's needs are more involved and at times more overwhelming than others.
My son Cameron was born with a normal dose of needs, nothing more than all the other babies on the ward. At five and a half months of age he developed Pneumococcal Meningitis and from that day to this his needs have escalated to become very special for him.
Pneumococcal Meningitis left Cameron with severe brain damage and only this week, sixteen years later, we have come to understand that damage more fully. It's sad but it is what it is and as much as I wish it had never happened I know that everyone in Cameron's life is better because of what happened to Cameron.
Along with the brain damage Cameron also lost all his hearing in his right ear. It is not easy to notice anymore because he has learnt to compensate and can in fact hear a pin drop or more importantly a whispered offer of chocolate. When he was younger we would watch him track noises by turning around in circles until he tracked the source of the noise he could hear.
One day at a party we met a woman who also only had one functioning ear. I am so grateful we met her because she was able to explain to us the hearing world Cameron was living in and from that day on we have been much more understanding of Cameron's reactions in crowded rooms, shopping centres and noisy environments.
Cameron has Epilepsy. When you say Epilepsy people tend to picture somebody dropping to the ground and jerking for half a minute to a few minutes. This is not how Cameron's epilepsy works and this week we finally found out why. When Cameron has a seizure it is a major life threatening event that lasts for hours. His breathing becomes impaired and we spend hours sitting in emergency waiting for his body to stabilize before he can be moved onto a ward.
Two days ago we finally found out why Cameron's seizures don't stop like other people's. His inhibitors in his brain which should stop his seizures no longer work and therefore his brain has no way of stopping itself. As terrible as it is, it's nice to finally know why.
So those are Cameron's labeled special needs - brain damage, deafness and epilepsy but these conditions lead to lots of other special needs such as lack of speech, lack of toileting, lack of independence, lack of daily skills, lack of social skills, lack of cognitive skills, lack of play skills and lack of general coping skills. He is a non verbal two year old trapped inside a sixteen year olds body.
So those are Cameron's Special Needs. We certainly don't live the life we expected to be living when our son reached his sixteenth birthday and at times his Special Needs become quite overwhelming but if it was a choice between having Cameron here with us or having lost him fifteen and a half years ago the choice is easy - I am so glad he is still here to share our lives and we never give up hope that as time goes by some of his Special Needs will improve or maybe even disappear. We dreamt he would walk and he did so anything is possible!
This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the world.
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